Persephone

Saturday, December 26, 2009

My son can have issues with communication, especially when trying to gauge a situation, but he is also quick-witted and clever.

Recently, he was at lunch at school, surrounded by girls (which is the usual for him), and a guy was there who was apparently resenting all the attention by son was getting. My son and the girls were talking and every time my son said something, the other boy would made a comment trying to make fun of my son. The chatting when on, but my son stopped talking after a bit. Finally, the other boy asked him, "Why aren't you talking?"

Me, this time. I've been having problems with a depression medication that, combined with a natural sleep aid, because said medication was giving me insomnia, apparently made me very ill, including anxiety attacks, racing heart, high blood pressure, muscle aches and cramps, severe joint pain, etc. I stopped the meds, then saw my GP's PA because I was still so miserable as the symptoms were wearing off and my psychiatrist is out of the country enjoying the holidays. She kindly gave me a prescription for a few days of Valium, then called me a bit later suggesting I go to the ER. I didn't go until the next day, after calling the PA, who notified the ER. And the usual bumfuckery occurred.

The doctor ignores my medical history, immediately assuming that my age has caused me to enter menopause and develop hypertension overnight. Yeah, I don't think so. She doesn't appreciate being disagreed with. Female doctors often don't handle disagreement from female patients well. They tend to react like male surgeons, which is badly.

I had a male nurse, who, surprise, was straight, married with children. We seemed to hit it off, and he chatted a bit while we waited for all the blood work and such to come back. He had at one time played drums, doing studio work in LA. Cool. Both hubs have played the drums, although I didn't know it before I married them. I might have rethought the whole marriage thing if I had known, but water under the bridge. He congratulates me on planning ahead by bringing a book to read. I had also brought in a bottle of drinking water, because getting anything at this hospital seems to require at least three levels of approval. He says he's pretty straightforward and I seem that way. I agree with him and start the freezing my ass off in a hospital gown and thin blanket for three hours phase. Blood is drawn and sent off. Unfortunately, the recurring headaches have recurred and the pain is so bad that I'm nauseated and there's no way I can read, so I'm lying there thinking about what a complete waste of time this is and I really wish I were home.

Then things started going sideways. The nurse comes back in and tells me about his great kids and how he made sure they understood he was in charge when they were still small by pulling over and spanking them both by the side of the road when they started kicking the seats. I do a mental, "Whoa," and think about what is lying about that I can brain him with if he decides that I need to be shown who's in control. (I always develop personal exit strategies for buildings and situations. I have walked out of hospitals when doctors have tried to coerce me into doing things their way. Security at most hospitals is pretty lame. If you want info on the easiest way to do it, just let me know.)

I mention that the doctor had said I was to have an EKG, but no one has shown up. He tells me he will check on it. I have learned that, "I will check on it," actually means, "I'm going to go take a break and if I happen to bump into the doctor I might remember to mention your comment, but don't hold your breath." Which is exactly what happened. I could hear the staff at the desk outside my room keep saying that my nurse was on break whenever anyone asked about him. The doctor came in a bit later, a bit nicer, as none of the tests are indicating hypertension or menopause, but she can't admit she was wrong, so we play the game. She asks about the EKG, I tell her no one has shown, and about five minutes after she leaves (I hear her ask about my nurse and be told that he is on break) another nurse shows up with the EKG.

Doctor reappears, we play the game, she is going to discharge me with recommendations, which I will mostly ignore because they're just face saving crap for her ego. She says she will have copies made of the test results to take with me, all of which were negative, so another waste of a good tree. I start changing back into my clothes. The nurse comes in to discharge the patient in the next bed, separated from me only by a curtain. I've heard the woman while I've been waiting. She's made comments about God's will and prayer and her pastor several times, so I assume she's some version of evangelical Christian. The nurse goes over her discharge papers. It's semi-good news that she did not have a heart attack, but the pain was related to stomach issues that she already is being treated for. Good. She's not going to die on Christmas Eve. He goes through the discharge papers with her, then suddenly brings up her "spirituality." I choke slightly. Then I tell myself that he's being nice, he knows she's Christian and is trying to help her cope with her issues.

About 20 minutes later, he appears in my section with the discharge papers. We're sitting down and he gives me the papers to review and sign and runs through the recommendations. Then he starts asking about my depression and coping methods and such. I tell him that I have chronic depression, I've done therapy and there are limits. He keeps pushing, I give him the look. He stops. (I am inordinately proud of "the look." I've worked hard to develop it, and it works amazingly.) Then he brings up my spirituality. Well, damn. I now understand fully why this guy, at a time when the one growth industry seems to be medical care, is working through temp agencies and can't get a full-time job. His disappearances on breaks, his insistence on discussing medical matters that are not his purview, and his bringing up religion are a trifecta that no halfway sane HR department is going to risk. I don't even bother with the look. I say, "Can I just get my discharge papers?" He hands them over, forgetting to give me the useless test results and I am out of that room before he can open his mouth again. The staff at the desk look at me with pity as I roll my eyes back toward the room.

Well, if you've gotten this far, I'm sure you're thinking, "What the heck does this have to do with her very cool kid?" Not a lot directly, but I always worry for him in these kinds of situations. He can have trouble communicating issues plainly, and I prefer to be with him when dealing with doctors and hospitals. What if he had been the one in the bed with a nurse asking about his mental health and spirituality? I'll walk out; I know I have the right to do that and I exercise that right. Most people don't, bowing to their social training to accept what is told to them by authority figures. I keep working with my children to understand that they have rights. If they are having problems with a teacher or anyone in authority and can't handle it, they need to tell me so that I can help them.

I have to talk to him about what happened to me this time. He needs to know what to do when things like this happen, especially since he's still a minor. And that's just one more lesson on dealing with the real world.

Sunday, November 1, 2009

Halloween brought out the differences for my son. He's in his early teens, now, puberty is kicking in, and peer pressure is having more effect. For months, he couldn't decide if he would dress up for Halloween. Then he conceded that maybe he would wear last year's costume (Star Wars Clone Trooper) again. Then he just ignored it. Finally, after his younger brother decided to go scary this year, for the first time, he decided to go scary too. In fact, he won the scariest costume award at the party at my company. Little brother was enviously unhappy. He could have worn the costume to school for spirit week, but he decided not to. But he did go trick or treating with his grandmother in her neighborhood.

Thinking about his reaching puberty, and being taller then me, had me crying a bit this morning. I was thinking about when he was a toddler and like to climb up on the coffee table and do a baby haka (http://en.wikipedia.org/wiki/Haka) in his diaper. I can still see the faces he made, and hear his stamping feet. It hurts.

My ASD child is sweet, thoughtful, kind and helpful. Almost all his teachers adore him as he's very well-behaved in class and volunteers to help the teacher and other students. However, this year he has a language arts teacher who seems to want to force my sweetie into a mold. My son writes stories that are wild and wonderful and first-person voiced. The words pour out. If it were an essay, this would be a problem, but fiction should be acceptable in many forms. This teacher graded my son's story a C+. I read the story. It was a rollercoaster ride about a kid who becomes addicted to a video game at an arcade, burns through his money, steals from his parents, then hatches a wild plan to steal the game from the arcade. It was a blast. It was definitely not C+ work. I'm giving this teacher one more chance, and if he grades my son's work like this again I'll be down in the principal's office as fast as my broomstick will get me there.

Monday, May 28, 2007

Oxytocin, as referenced in the Healthday article, rang a bell. It only took a minute to find, but it's the hormone that makes people trust each other.

Great, a drug that will make autistics trust NTs so they can be used and abused more easily. Exactly what we don't need.

Autistics don't interact because it can be painful, mentally and physically, and not because we are incapable of social interaction. We are loaded with empathy; we feel what you feel, deeply, and we suffer with you.

Temple Grandin empathizes with animals. It's usually not as overwhelming as empathizing with a human. Animals seem to sense the differences in autistics. They swarm around me, pushing for physical contact. I've had squirrels, chipmunks and wild rabbits come to my hand.

One in 150? I think it should be higher if the human species is going to survive.

Sunday, May 27, 2007

I just read an article on Yahoo! News from Healthday Reporter regarding your recent conference on autism. Some of the comments by doctors I found self-serving (Dr. Kaufman's remarks seem to push parents to invest in the services provided by his firm, without presenting proof that the child's improvement might simply occur with maturation), scary (Dr. Kaufman's remarks about medications, when so many autistics have unusual adverse reactions to medications, and Dr. Hollander's reporting on the use of oxytocin), but the most frightening part of the report was the referral to Autism Speaks at the end of the article.

Autism Speaks is an organization that does not allow autistics any roles in administration, governance or consultation. They choose to marginalize the people they say they are trying to help. They reject autistics who do speak for themselves as not truly autistic. Their decision to fund and distribute a movie that has parents speaking in front of their autistic children (as if the children did not understand) of desires to kill the children, and of the unbearing life they suffer as the result of having autistic children.

Perhaps this is not your choice. If it is not, please, notify Healthday Reporter to clear this misconception.

SUNDAY, May 27 (HealthDay News) -- How widespread is autism? And is the condition, which centers on characteristics such as the inability to form personal relationships, being properly diagnosed?

New York City-based YAI-National Institute for People With Disabilities (YAI-NIPD) (It appears to be operative only in New York and Puerto Rico. I don't know why.) is a not-for-profit organization that not only assists families who have members with a variety of developmental disabilities, but also holds a series of conferences that highlight the latest research into specific conditions.

Earlier in May, YAI-NIPD held an autism conference that addressed the apparent increase in autism cases. One reason may be a broader definition of autism, said Dr. David Kaufman, medical director of Premier Healthcare, a Manhattan organization specializing in disability services.

"The estimate was one child in 166, made by the epidemiology unit of the [U.S. governments] National Institutes of Health," Kaufman said. "Now it is down to one in 150. I think that since the definition has been broadened, a lot of children are getting diagnosed who are at the milder end of the spectrum."

The cause of autism remains unclear, Kaufman said. "I believe that there is something in these children that predisposes them to autism and maybe something that triggers it, perhaps a viral illness, like children who get diabetes at an early age."

Whatever the cause, "the best treatment so far is diagnosing it early on and intervening early on, sometimes with medications," Kaufman said. "There is a broad array of early intervention services."

(Now we have a problem. Auties often have unusual reactions to medications; I've suffered quite a few myself: diarrhea and heartburn are common, but I also developed chronic depression from ibuprofen. He doesn't make clear what types of medications. This will require some research.)

When a child's mysteriously detached behavior arouses parents suspicions, "the first line of defense is with the pediatrician," he said. "The child can be referred to a developmental pediatrician or pediatric neurologist or specialist who will do an evaluation and then send the child to a speech therapist, a language therapist or another therapist for treatment. The earlier you intervene, the better children do."

(He's obviously selling his company's services. He's a bastard for preying on parents who are surprised and scared by an autism diagnosis and the horrors that Autism Speaks is selling.)

Financial help is often available from state governments, but "each state has different funding lines," Kaufman noted.

Children's basic medical needs should not be overlooked, Kaufman said. "Their medical needs are the same as anyone else, but it is harder to get at them," he said. "Once they get to age 2 or 4, they are able to tell the doctor what is wrong with them, but they are not as cooperative as another child might be."

(Oh, please. Maybe we're not as cooperative because we're not stupid enough to believe that the shot we get this time won't hurt as much as the shot we got last time, or that the candy we get afterward will make it all better.)

Although there is a long way to go, "One thing that is being done right is an increased awareness of autism," said Dr. Eric Hollander, professor and chairman of psychiatry at Mount Sinai School of Medicine in New York. "It has become a priority funding issue for the National Institutes of Health. There are findings that directly impact on treatment and also can lead to a better understanding of the underlying causes."

One area that clearly has been neglected is autism in adults, Hollander said. "The high school or college population, the need for residential care is also there. Child psychiatrists and pediatricians will not necessarily be treating these individuals when they get older.

"And those who work with the older population don't have enough training. We need to know a lot more about intervention with medication, how it alters outcome, the repetitive behavior, the rigid behavior, and also new treatments for disruptive behavior."

What causes autism? Attention is being focused on oxytocin, a hormone produced by the pituitary gland, Hollander said. It appears to play a role in social behavior and repetitive behavior. "Now we are starting to have a certain impact on symptoms by administering oxytocin in various forms, such as intravenously."

(Crap. Drugs. Research time, again.)

Attention also is being paid to environmental and genetic factors, Hollander said, "things in the environment that influence what genes are turned on and turned off. We need to know a lot more about environmental factors and how they play a role in some people with autism."

One indicator of how much remains to be learned is the widely differing rates of diagnosis of autism from state to state, Hollander said, but that is just part of the picture. "We don't have predictors of which individuals will respond to which kinds of treatment," he said, but ended on a hopeful note: "With additional funding, there will be more rapid breakthroughs."

Dr. Steven Lowe, the medical director of YAI-NIPD, added that autism treatment still is often a struggle. "It's a challenge, because so little work has been done in the management of patients with autism and also in mental retardation and developmental disabilities," he said. "There has been very limited work on management of such patients in the primary care area and very limited research. There is limited interest for primary health-care practitioners, because it is such a daunting prospect."

But there is impetus for progress from "parents and other caregivers and the media," Lowe said. "Among them, the issue of autism is better recognized, and it is less of a stigma. People with autism are becoming more visible. Caregivers are advocating for better access to the same sort of health care that disabled people are getting.

"There is a tremendous lack of formalized training in medicine appropriate to this patient population," Lowe added. "But there are providers out there -- institutions like our own take care of patients with mental disabilities, mainly through on-the-job training."

For families facing a problem, "my recommendation is to find a place that specializes in this patient population," Lowe said. "Look for a multidisciplinary system where everyone is comfortable with mental retardation or developmental disabilities such as autism. You need a large group of clinicians in various fields, the kind of team approach that has proven to be very effective."

Then there is the influence of other elements, such as diet. Dr. Joseph Levy, a pediatric gastroenterologist who is professor of pediatrics at the New York University School of Medicine, offers a theory that developmental disability is often literally a gut issue.

"There are a whole host of anecdotal reports about how particular diets have enabled children to make progress," Levy said. "Sooner or later, every parent will focus on the dimension of nutrition of child care and will experiment with it. For example, if there is aggressive or self-injurious behavior, the explanation is that the child has reflux irritation or difficulty with bowel movements."

The problem is that parental concentration on dietary factors means that they "sometimes are committed to thinking that autism is the manifestation of a leaky gut," Levy said. "But we don't know whether it is proven that autism is really a disease that affects the immune system in the gut, with toxins that are absorbed from the intestines."

It is necessary to work with nutritionists to be sure that children with autism get the proper micronutrients, but "autism is not one diagnosis, and this can put parents to great restrictions and might even be harmful," Levy said. "We do have to move forward the science that enables us to understand what is going on in the gut of the child, but we must do that without a preset ideology."

(I was a little worried by Dr. Levy's first statement, but his further remarks made me feel better. Gut problems seem more common among autistics, but they aren't necessarily tied together. They could as easily result from a certain genetic background, a genetic background that may result in a higher incidence of autism. Frankly, if your child is having diarrhea, stomach pain, vomiting, don't blame it on the autism, it can be treated separately, just as you would an NT with the same problem.)

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About Me

The name of my blog refers to me, not my son, and references my Southern heritage.
Temple Grandin:
What would happen if the autism gene was eliminated from the gene pool?
You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.
I certainly don't agree with Temple regarding the non-verbal autistics. They really should be called non-speaking, as they are often quite verbal when given a keyboard or letter board.
And I don't want a cure.